ABSTRACT

The study aims to examine the effects of the COVID-19 on the psychosocial life and the sources of social support of people with rare diseases in Turkey. The research was conducted with 178 rare disease patients. The sociodemographic questionnaire, The Fear of COVID-19 scale, General Health Survey-12, and the Multidimensional Scale of Perceived Social Support were used. The Fear of COVID-19 Scale average score is 20.20 ± 6.11, General Health Survey-12 average score is 5.82 ± 1.77, and the Multidimensional Scale of Perceived Social Support average score is 52.84 ± 14.23. There is a positive correlation between ages and scores on The Fear of COVID-19 Scale (r = .221, p˂.001). There is a negative correlation between the participant’s scores on the Multidimensional Perceived Social Support Scale and the General Health Survey-12 (r = -,265, p˂.001). It is suggested to develop social service delivery systems to support people with rare diseases.]

摘要

该研究旨在检查 COVID-19 对土耳其罕见病患者的社会心理生活和社会支持来源的影响。这项研究是在 178 名罕见病患者中进行的。使用了社会人口学问卷、COVID-19 恐惧量表、一般健康调查 12 和感知社会支持的多维量表。恐惧 COVID-19 量表平均得分为 20.20 ± 6.11，General Health Survey-12 平均得分为 5.82 ± 1.77，感知社会支持的多维量表平均得分为 52.84 ± 14.23。年龄和对 COVID-19 恐惧量表的分数呈正相关（r = .221，p˂.001）。参与者在多维感知社会支持量表和一般健康调查 12 上的得分之间存在负相关（r = -,265, p˂.001）。